Advocacy
The Hydrocephalus Scoop on Capitol Hill — June 2025
June updates on Medicaid cuts, CDMRP research funding, and telehealth bills impacting the hydrocephalus community. Make your voice heard on the Hill!
Read MoreExplainer of the President’s FY 2026 HHS Budget Proposal
President’s FY 2026 budget proposes major NIH cuts, agency mergers, and restructures that could reduce neuroscience and hydrocephalus research funding.
Read MoreThe Hydrocephalus Scoop on Capitol Hill — May 2025
House passes bill with major Medicaid changes—millions could lose coverage. Learn how this impacts the hydrocephalus community and what’s next in the Senate.
Read MoreMedicaid Impact of U.S. House Reconciliation Package on People with Hydrocephalus
Learn how proposed federal Medicaid changes could affect people with hydrocephalus, including burdensome administrative requirements, cuts to vital health services, home care, and coverage for medical equipment.
Read MoreThe Hydrocephalus Scoop on Capitol Hill — April 2025
Congress has returned to Capitol Hill following Easter recess and is beginning the reconciliation process for a major legislative package. Big decisions are being made — and we have everything you need to know.
Read MoreAssessing Recent HHS Reductions in Force (RIF) Layoffs and Their Impact on the Hydrocephalus Community
Mass layoffs at HHS are disrupting key health agencies like the FDA, CDC, NIH, and ACL—jeopardizing research, care, and innovation for the hydrocephalus community. These cuts threaten access to treatment, delay medical device approvals, and weaken support systems for patients nationwide.
Read MoreWhen We Cut Research, We Cut Hope: The Human Cost of Medical Funding Cuts
When we cut research, we do not just slow progress. We delay relief. We postpone innovation. And, for many patients and families, we delay hope.
Read MoreThe Scoop from Capitol Hill – March 2025
Get the latest federal updates on hydrocephalus research, advocacy, and policy changes. Learn how you can take action to protect critical funding and healthcare access!
Read MoreThe Scoop from Capitol Hill – February 2025
House and Senate Republicans have been focused on passing the Administration’s priorities. The Senate approved a billion-dollar budget framework focusing on defense and border enforcement funding. On the other side of the Capitol, the House recently passed its own budget framework. This package is wider in scope and costs.
Read MoreHydrocephalus Association Medical Advisory Board And Scientific Advisory Board Issue Response to Cuts to NIH Indirect Cost Payments
The Hydrocephalus Association Medical Advisory Board and Scientific Advisory Board urge the Administration to rescind the directive for the National Institutes of Health (NIH) to cap indirect costs for research funding at 15%.
Read MoreHydrocephalus Community Advocates for Change on Capitol Hill
The Hydrocephalus Association brought over 50 key leaders from the hydrocephalus community to advocate for change by meeting with their congressional representatives on Capitol Hill.
Read MoreThe January Hydrocephalus Scoop on the Hill
The 119th Congress is in full swing. Republican leadership is zoned in on crafting a large legislative package that includes key priorities around tax, immigration, and budgetary issues. The package will likely go through a process called reconciliation, which allows certain budget-related bills to bypass the 60-vote filibuster in the Senate.
Read MoreAdvocates to Rally on Capitol Hill for Hydrocephalus Awareness and Research Funding
50 key leaders in the hydrocephalus community from 18 states will convene in Washington, D.C., for Hydrocephalus Capitol Hill Day.
Read MoreHydrocephalus Association Expresses Concern Over Executive Orders That Could Affect Hydrocephalus Research
The Trump Administration recently issued Executive Orders that could have long-term consequences for hydrocephalus research, potentially impacting the health of hydrocephalus patients, particularly children.
Read MoreLooking Back at Key Accomplishments in 2024
2024 was a year full of legislative accomplishments for the Hydrocephalus Association and the broader hydrocephalus community. Our successes could not have been achieved without the hard work of advocates from across the country. Partners in Congress were some of the strongest contributors for our mission as well.
Read MoreU.S. House Foreign Affairs Committee Holds Hearing on the Challenges Affecting Global Hydrocephalus Patients
The House Foreign Affairs Subcommittee’s November 20th hearing discussed global brain health challenges, focusing on hydrocephalus in developing countries. Experts, including Dr. Benjamin Warf of NeuroKids, highlighted the need for better care and training to support patients, particularly in low-resource regions. The hearing also addressed the lack of USAID programs for brain health and the importance of international aid for hydrocephalus treatment.
Read MoreThe Exclusive Hydrocephalus Scoop on the Hill | Key Updates for November 2024
Washington, D.C. is buzzing as Congress pushes key legislation and the Hydrocephalus Association partners with advocates to drive priorities forward. With government funding set to expire on December 20th, a short-term resolution is likely. The new presidential administration and Congress will bring major changes, especially in the first 100 days. Stay tuned!
Read MoreTraumatic Brain Injuries Delegated as Chronic Condition by Medicare
In a monumental step for Americans living with traumatic brain injury (TBI), the Centers for Medicare and Medicaid (CMS) recently added TBI as a qualifying condition for Medicare Advantage Chronic Special Needs Plans (C-SNP).
Read MoreWhat Hydrocephalus Patients Should Know for Medicare Open Enrollment
As Medicare beneficiaries navigate through the open enrollment period, it is crucial for them to understand the surplus of 2025 changes as they choose a new Medicare insurance plan. The Medicare Open Enrollment Period began on October 15 and will close on December 7th.
Read MoreGet the Exclusive Hydrocephalus Scoop on Capitol Hill for October 2024
As healthcare advocates race to secure passage of critical bills before the end of the 118th Congress, the Hydrocephalus Association (HA) is joining forces on Capitol Hill, advocating for vital legislation to support Medicare coverage for breakthrough devices, strengthen the medical workforce, ensure fair billing practices, fund brain research, and raise hydrocephalus awareness.
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